What do cancer patients’ relatives think about addressing cancer family history and performing genetic testing in palliative care?

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Abstract

Palliative care may be an opportunity to discuss cancer family history and familial cancer risks with patients’ relatives. It may also represent the last opportunity to collect, from dying patients, clinical data and biospecimens that will inform cancer risk assessment and prevention in their surviving relatives. This study aims to explore the perspectives of cancer patients’ relatives about cancer heritability, addressing cancer family history, and performing genetic testing in palliative care settings. Thirteen first-degree relatives of cancer patients who died in palliative care participated in the study. Two focus groups were conducted and transcribed verbatim. Two independent coders conducted a thematic content analysis. The themes included: (1) Knowledge of cancer heritability; (2) Experiences and expectations regarding cancer family history discussions, and (3) Views on genetic testing in palliative care patients and DNA biobanking. Participants seemed aware that cancer family history is a potential risk factor for developing the disease. They considered the palliative care period an inappropriate moment to discuss cancer heritability. They also did not consider palliative care providers as appropriate resources to consult for such matters as they are not specialized in this field. Participants welcomed DNA biobanking and genetic testing conducted at the palliative care patients’ request. Cancer occurrence within families raises concerns among relatives about cancer heritability, but the palliative care period is not considered the most appropriate moment to address this issue. However, discussions about the risk to cancer patients’ relatives might need to be considered on a case-by-case basis.

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Acknowledgements

We thank Sue-Ling Chang for linguistic editing of the manuscript.

Funding

This study was funded by the Fonds de Recherche du Québec-Santé and the Direction générale de Cancérologie du Québec. JEC is a recipient of scholarships from the Fonds d’Enseignement et de Recherche (Faculty of Pharmacy, Laval University), Laval University Cancer Research Center, Laval University Research Chair in Palliative Care, and the Fonds de Recherche du Québec-Santé. HN holds an Investigator Award (Junior 2) from the Fonds de recherche du Québec-Santé.

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Correspondence to Michel Dorval.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

This study was approved by the Research Ethics Review Board of the CHU de Québec-Université Laval (Quebec City University Hospital-Laval University). During the recruitment process, participants were provided with information about the study and on their rights and responsibilities. Each participant signed a consent form before the focus group. First names only were used during group discussions to maintain confidentiality. To report participants’ quotes, first names were replaced by numbers. Participants were informed that research team members (JEC, AM, HN, MD, SP) would be observing the focus group sessions behind a one-way mirror to record field notes.

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